Just a quick update . I had a cat scan last week and as usual had the usual anxiety waiting for the results . Unlike , many of you , I wait for my appointment so my Dr can read them first . , happy 😊 to report it was a good one . I am maintenance chemo with Avastin and Lynparza. I leave all of the decisions up to my Dr and does tweak things according to my blood counts etc. I go to her biweekly and do get a good physical then . My CA 125 bounces around 100 but she said as long it's stable ,she is happy . I did get a third Covid shot and I do have allergies. Hang in everyone , and say a prayer for the researchers who are working for us daily, may they hit new and better therapies soon. Have a great day everyone!!
Gillian,,l
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Thankyou Sashay, Scans can throw you into anxiety mode , I am also allergic to iodine and was seated next to a woman had gone into cardiac arrest twice because of an allergy, I had premedicated but it still unnerved me a bit .
Hope that make the most of lattes and beignets.
I think you might enjoy a little book I purchased through Amazon by Charlie Mackesy, called "The boy , the mole ,the fox and the horse " it is mainly about friendship and love , one of his quotes says " Sometimes just getting up and carrying on is brave and magnificent ".
Thank you Lesley , Scans can cause anxiety that is certain. I read that you are concerned about Ca125 , count rising , mine bounces between 75 and 100 , asked my oncologist about it , her comment was you are stable and that is good .
My nurse said that they can be unreliable as , I have Autumn allergies, so it could be them and I recently had my third Covid booster, and other ladies on here said that counts were affected by the shots .
Hope you continue to do well too , this disease is certainly a challenge . I too , was very healthy until I was 73 , I am now strong enough walk daily and work with weights, trying to keep my bones strong .
Hi! Yes, mine was 16 in October and last time was 50ish but my onc is quite happy and said my scan was very reassuring and I shouldn't worry! I know all sorts of things can affect it, but I still want it to be rock steady at 16 at the most! Next test at the end of November. You are doing incredibly well with your weights and walking - an example to us! x
LesleyGB, My doctor , seems to think that the scan is more importanttoo The only thing that showed up was arthritis in my left hip , which I know needs replacing after years of running , my right hip was replaced 15 yrs ago .
I ,too , stress over the CA 125 count , it seems more so than my Dr and my chemo nurse .
Hi! Yes, my onc stressed that my CA125 was higher than it should be but not by much and the scan was the thing. When I had my last scan, my onc picked up that I had a little bit of a hernia on my incision site, and that my lower back was "a bit ropey" due to wear and tear. Also he gave me the results from a completely unconnected shoulder xray and confirmed that it wasn't broken but that there was a narrowing between two of the bones that might need attention! It was like getting an MOT!
Merci beaucoup Ruebacelle !!Paris is one of my favourite cities to visit , I love it . Hope that you too are doing well . This is a nasty disease and I hope soon they can get better diagnostics for it .
Cher 96 , No I don't, just a brilliant Doctor , at least I think she is !! I was born in North Wales UK and now between NJ and Maryland. My doctor is in Philadelphia PA .Gillian, Mookie Fox
Hi Cheryl 96 ,Sorry , my son thought he had covid ,he is fully Vaccinated but on vacation in Ecuador .test was Negative but had to change home flight since he was too sick to travel .The practice is Rittenhouse oncology and hematology on N.Broad Street philadelphia.
Warning , wait times are sometimes irritatingly long as they do hospital rounds first . All the doctors are good 👍 I have seen both Rubin doctors, both are oncologists .
I went to Jefferson for my surgery .
I don't know if they are plugged into any research options which could be a factor in your choice . As I am older , I doubt I would qualify for anything .
Good luck to you ,I hope that you are doing well .
SheilaF, I think it is encouraging to give out good news , since this disease is such a struggle for so many . Thank heaven that they seem to be able to get better handle on it with new drugs
Yes thank goodness they are, keep well & positive it all helps. I am on holiday in Tenerife at the moment. And lm doing the 100 mile challenge for breast cancer research so chuffed lve got to 130 and still going. If its helps breast cancer its helps us all and our dear daugther in law was recently diagnosed so lve enjoyed the challenge and 2 years ago l was so weak after my chemo. Im now doing great thank goodness and enjoying life . Bless you all Try and eat well, do what you can when you can.
We can all do this, l was devastated this time 2 years ago lm back to positive and can get through this with all you wonderful brave ladies.
Lucky you !! And congrats on your walk , I am sure your daughter in law is grateful for your support . We are all in this together and should give support where we can .So glad that you are doing so great . I certainly feel more normal than I did a year ago .
It's always fingers crossed, life can change on a sixpence!! But , I will hang in there and follow my Dr's orders and keep my fingers crossed ..All the best to you too fellow warrior .
Hi againI don't have brca either. Just finished chemo and am on avastin. Just wondering why my onc hasn't mentioned Lynparza. I guess he's waiting to see how I respond to Avastin without chemo before he adds another. 🤷♀️ It's always a "wait and see"
That is fantastic news!!!!May I ask are you Braca negative? I am due to go on Lynparza this December after last chemo treatment on Nov 15 (cant wait)! Keep up the great work!
Hi Summergold , I am Braca negative , and had a rough time when I started on Lynparza the first time , the dose was much too high for me and my blood counts dropped so much that I had to stop it , then I had a recurrence and had to back on chemo. I started back on the Lynparza very gradually and have gradually been able to up the amount without any ill effects .
Good luck , when you get it !! . It had only been approved for non braca patients , shortly after I began this challenge, so I think it was a hit and miss situation with dosage .
thank you Gillian for responding so soon! Can I ask what dosage you started with? My oncologist who I trust wants me to start at 300 mg morning and night...... I am wondering since I don't have the HRD component if it will give me the results I am hoping for. It's funny if it were not for the cancer I would be just great health wise LOL She did send my blood out to a specialist testing lab who did say there is still those nasty cancer cells in my blood waiting to attach to something! I am tumor and nodule free at the moment so blessings for that.Debbie
Hi Debbie , I was started at that dose , but I am not very big and I am 77 yrs old , it flawed me , I couldn't even walk up the stairs and my blood counts went way down
So I was taken off it and had to take iron capsules and get shots.
I then I had a recurrence, having said that ,I think they have come to realize that it is weight sensitive. You will be closely monitored.
Back on it , I started out at 150 mg every other day for 3 days for my body to adjust to it . It has gradually been increased , but still a lower than prescribed dose . Your body chemistry may be able to tolerate it better .Your Dr will keep a close eye on your blood and you should report how you are feeling.
I still get achy legs ,a runny nose and wake up with a headache which goes away with a cup of tea .
I am on a maintenance chemo right now , my Dr wants to get my CA 125 count down a bit more . I went last Monday and I will take the Lynparza everywhere day starting on Saturday. 5 per week . I am very chemical sensitive so she wanted start slowly for my body to adjust to it . So far so good , no problems. I am careful not to eat anything too spicy or acidic .
Rightly or wrongly I don't ask too many questions , I just go with the flow.
Not too many people know that I have this challenge, since I am a very private person and don't do well on sympathy . I told only those who I knew would be supportive but that's just me .
Hope it works for you , your Dr will monitor you , so try not to worry .
Hi Gillian. That’s great news! I’m glad for you. I can’t believe your onc sees you so frequently. I’m at Dana Farber in Boston and on Olaparib/Lynparza and mine is pushing me to every three months with scans every six months only because my CA 125 is not a marker for me. Xx
Hi Delia, My oncologist works solo , although she has other offices with other partners. I have known her over 30 years and she grew with my son's father-in-law ,who is my GP . She keeps a close eye on me . Having said that , I see the same other patients there at the same time , so she may just use a different protocol. She trained at Sloan-Kettering. Who knows, if works its fine with me .
Glad to hear your scan is clear and long may it continue. Can I please ask, what do you mean by your dr gives you a good physical at biweekly appointments, what tests/examinations are these? She sounds a very thorough doctor and you seem to be in great hands!
Hi RoseMS, I think that I'm in good hands . She always checks my blood pressure, Temperature, oxygen levels , my weight my lungs and checks out my abdomen and breasts for any lumps and lymphnodes. She also makes sure that my intestinal organs sound ok . As she said things slow down as you age .
She questions what I eat and how much .My Gait for balance and my energy level . She is not an in and out Dr .She is very thorough!
Cumbrialass , Thank you, It's certainly a journey where you feel as if your walking on eggs all the time . Had terrible night's sleep last night , so it going to down day .
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